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What if you spend a week in video EEG monitoring and can't record a seizure?

Wed, 01/28/2009 - 23:59
Topic: Diagnostic Dilemmas and Testing
My son is 12 yrs old with focal, complex partial seizures and tonic clonic sx. He has had a PET, MRI, and several EEG's. We went to an epilepsy center twice, three months apart, for video-EEG monitoring to try to locate the seizure focus, to see if he might be a surgical candidate. Each time, we were there for 8 days, totally off meds, and he never had a seizure. After the first trip, he was taken off Trileptal and Keppra because the doctors thought the Trileptal might actually be making him worse. (He has sx about 2-3 times a month and misses a day or two of school each time.) He was started on Topamax, but still has the same number of sx. Then we went for the second try. After that failed, he was returned to Topamax and Lamictal was added.MY QUESTION: Is there any other way to see if the sx are coming from a localized area than an ictal EEG? If you can't get an ictal EEG, do you just go home and suffer, and stay on drugs forever? (By the way, his inter-ictal EEGs show spikes on the left side, the PET shows hypometabolism in several lobes on the left side, and his sx simeology indicates a left-side start to the seizures. The MRI showed left ventricle larger on left than right.) We feel like we have hit a brick wall in trying to figure out what to do for him.

Comments

Re: Video/EEG Long Term Monitoring, no seizures?

Submitted by Lisa in Missouri on Thu, 2010-12-16 - 02:26
okay that is un-flipping-believable that the battery failed. The frustration! did you just scream? I'm dying to know which hospital, but it probably doesn't even matter, does it?

Re: What if ..

Submitted by theflyhunter on Fri, 2010-01-01 - 20:22
i`m sitting here during a veeg, it`s day 5 and no sz yet. it is quite tedious but i have 2 days left, it`s kind of strange hoping to have a sz. wish they could come up with a way to move around a bit. it will all be worth it if they find they can do surgery and hopefully get rid of them forever.

Ambulatory EEG

Submitted by omega3 on Tue, 2010-02-16 - 13:28

Hi Celee

I feel your frustration.It took me three Video EEG's to get a reading strong enough to get a recording.

If you cannot get a reading through the avenue of a Video EEG, then the next best thing to do is probably go back to your neurologist/epileptologist and request an Ambulatory EEG.This procedure is basically the same as a Video EEG except after being hooked up, your son will be sent home to do his normal routine (except shower of course!) and will be living in his natural environment.He will wear what is about the size of a walkman on his waistline which is what records his brain waves.

You say he has seizures during the month so if you can pin-point the specific time of the month (if there is one) this may be your best time to have the procedure done.

Good Luck!

Alex :)

Hi Celee

I feel your frustration.It took me three Video EEG's to get a reading strong enough to get a recording.

If you cannot get a reading through the avenue of a Video EEG, then the next best thing to do is probably go back to your neurologist/epileptologist and request an Ambulatory EEG.This procedure is basically the same as a Video EEG except after being hooked up, your son will be sent home to do his normal routine (except shower of course!) and will be living in his natural environment.He will wear what is about the size of a walkman on his waistline which is what records his brain waves.

You say he has seizures during the month so if you can pin-point the specific time of the month (if there is one) this may be your best time to have the procedure done.

Good Luck!

Alex :)

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